Equipping People To Make Sense of What Is Said
Welcome to the Proventus.org.uk Home Page
Proventus.org.uk Is a charity registered in England and Wales.
The object of the charity is to provide information about new and novel treatments for autoimmune, neurological and inflammatory conditions.
The charity is entirely volunteer run. It has no large offices or rents to pay, nobody receives any salary, all monies it raises is used solely for the work it is undertaking.
90% of the charity group are sufferers of a particular condition.
Proventus began its life as a pressure group when more than 200 disaffected sufferers of autoimmune and neurological conditions came together during 2004.
Dissatisfied with their experiences and being uncomfortable with what they considered to be the detrimental and closed minded actions of others, they decided that they wanted to have an independent voice, a voice more demanding of action at the levels of treatment, cure, research, rehabilitation and charity.
The group wanted to have a charity group that is run by sufferers for sufferers, not by corporate style charity groups.
They wanted a health charity that did not rely on, or receive, donations from the health industry.
The term autoimmune disease refers to a varied group of illnesses that involve almost every human organ system.
Unlike cancer, which is an umbrella category for a range of diseases, auto-
There has been virtually no general focus on auto-
Often sufferers are not taken seriously when first consulting their health professionals.
Symptoms are likely to be vague in the beginning with a tendency to come and go, and are difficult to describe accurately.
Often the person is shunted from specialist to specialist and forced to undergo a battery of tests and procedures before a correct diagnosis is made, which can sometimes take years.
Why awareness of new and novel treatments
The pharmaceutical industry is approaching a “patent cliff” whereby the strong market position it currently holds is set to decline over the coming few years.
The majority of drugs that were approved for use last year have been researched and developed not by “bigPharma” but by the smaller pharmaceutical companies.
Drugs are given a clinical score by health professionals who generally will see a person with a given condition as a number rather than a human being.
They may generate a prescription for a medication against its considered efficacy as opposed to its proven efficacy.
An often neglected point is whether a particular medication, whose clinical trials score apparently show improvements, will actually assist in improving a persons “quality of life”.
Improved clinical trial parameter scores should be set against whether the use of the medication will add to the persons quality of life. That is for them to actually be “feeling better”.
There is much more to fending of the consequences of any symptoms of a disease than undergoing drug therapy alone.
Is it not right that “health/medical” charities should be on the side of the sufferer working to support them?
Alternatively, should they be the corporate entities, with highly paid CEO’s, that some of them may appear to of become?
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